Living my crazy life with Myasthenia Gravis

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My heart is heavy today. Yesterday I lost a dear friend. I hate Myasthenia Gravis. I really, really hate it. At the same time I would never have gotten to know my friend if not for MG thus the blessing.

The illness itself is a curse. I hate it with all of my being. However, I have met some wonderful, caring, supportive people who I otherwise would have never known. One of these dear people passed away yesterday. I am heartbroken.

He was one of the first people I met once I joined the online support group. He was very knowledgeable about MG. He could sometimes be harsh or blunt. He was a beacon of strength and full of faith. He cared for us all greatly and always strived to protect us. He was a teacher. He was a friend.

He battled this dreadful illness for many years. He had a type of MG that wasnt easily treated by the conventional methods. They had tried nearly everything to control his symptoms, nothing was working. He was very ill and barely able to care for himself. He never gave up. He held onto his faith and knew that God would see him through.

He is healed now, he has a new body. No more sickness, no more pain. He is rejoicing in heaven with his lord that he loved so much. However, on earth we grieve.

I hope that I can let my light shine as brightly as he did. I hope that I can be a teacher to someone who needs it, and a comfort to them in a dark hour.

R.I.P Steven Taylor. To be gone from this world is to be present with the lord. We love you and miss you. I will carry you forever in my heart.

Wow! My first week of the 90 day challenge is over. I must say I am hooked! According to the dreaded scales I have not lost a pound. That’s right not one single stinking pound. However, that will not stop me. I can not even explain how much better I feel! Its crazy! Now some boring details….

First of all I must tell you I did not do some radical change in all of my habits. The ONLY thing I changed was replacing breakfast and lunch with a shake. That in itself was probably a big shock for my body because most of the time I don’t eat breakfast. I still drank Pepsi, and I still ate a regular dinner. I even indulged in a snack now and again. I have been tracking my calories using the cool app for my I-phone called My Fitness Pal. I have been trying to stay under 1200 calories a day and I did pretty good last week.

As I said earlier I feel so much better. Let me elaborate a little on that. Warning some of the following information might be graphic, but hey I’m all about being honest here! After all my goal is that hopefully something in my life can help someone else.

First of all I have tons more energy. Its crazy really. I’m sure my body was starved for nutrients. If you have MG or know anyone who does, you know energy is in high demand and low supply. It has been pretty nice to feel almost normal this past week.

Secondly, I have MAJOR problems with my stomach. MAJOR! Usually I get the least bit hungry, get a severe pain in my upper stomach, and if I don’t eat right away or drink some milk I will get the cold sweats and pass out. It’s really no fun and has scared my family on several occasions. On top of that every time I eat I RUN to the bathroom. I often have wondered how in the world I managed to stay to heavy when food never stays in my body long enough for me to even absorb it. Well guess what? This week since starting the shakes…no problems with my stomach! How do you like that? I have been hungry, sometimes even starving and no pain, no sweats and no passing out. Even better, I havent been running to the bathroom every time I eat!!

These things alone are enough to keep me going. Even though, I havent lost pounds yet. I feel so much better and I swear my clothes are feeling loose. Of course I didn’t measure myself when I started maybe I will do that this week.

So my opinion so far is these shakes are awesome! I would recommend them to anyone even if you don’t need to lose weight, we all need good nutrition and these sure have it. Stay tuned…Ill update more next week. In the meantime check out my website if you want more information. http://www.MissyTinsley.bodybyvi.com

Maybe you have heard of it? It’s all the rage right now. Body by vi 90 day challenge. Basically you replace two meals a day with their shakes. Sounds easy, right?

The shakes are PACKED with nutrition and low in calories. And from what I hear pretty tasty.

I need to lose about 70 pounds to reach my ideal weight. Which pretty much makes me FAT! I would love to blame it on baby weight, but my oldest is 14 and my youngest is 3 so I am pretty sure that excuse wont fly. I don’t really eat a large quantity of food, but what I do eat a lot of is JUNK. I am a chocoholic! I LOVE IT!

I am hoping to lose enough weight to go off some of my meds, and just feel better. Especially before our big trip to Disney in June.

I thought I would share it here for two reasons. One it will hopefully give me some accountability. Two maybe someone out there can benefit from my experience. Who doesn’t want to lose weight and feel better?

My journey begins tomorrow. I will keep you posted. In the mean time if you have any questions feel free to ask, and check out my website for more information.

Some people might get offended but, tree hugger I am not. I like modern-day conviences and honestly don’t really give much thought to the fingerprint I am leaving on the earth. I know its horrible, but its true.

However, I have recently became addicted to a site called Pinterest. Heard of it? I love it! So there are all kinds of cool ideas on there. From food, to crafts, to kids projects, and all kinds of make your own __________.

I have pinned DIY laundry soap, fabric softener, shower cleaner, mildew remover, general cleaner, shampoo, and even deodorant. Now a lot of people make all these products themselves because the ingredients are more natural and not full of toxins that we expose our homes, pets and children to. I have tried a few of these simply because I am curious, and I am all about saving money!

Lets talk about the fabric softener. Its crazy!! Did you know you can use vinegar as a fabric softener? Dont be alarmed once it goes through the rinse cycle you can’t smell the vinegar. However, I love for my clothes to smell fresh and clean after the laundry so when I saw this recipe for fabric softener I had to try it!!!

Basically you use vinegar and hair conditioner! Yep that’s it! I told you it was crazy!

Let me share with you first the basic recipe I found on Pinterest:

6 cups water
3 cups white vinegar
2 cups hair conditioner

Stir it all together. Do not shake it will foam!

I tried this first using Suave Ocean Breeze Family size conditioner. It took the whole bottle. It worked well. However it did not have enough scent for me. Sooooo I changed it a little.

I stopped at the Dollar Store to grab some conditioner, and I stumbled upon Suave Family Size COCONUT!! COCONUT! Who doesn’t like coconut? So I bought two bottles!!

This time I warmed mine on the stove slightly and stirred with a whisk. My original batch didn’t seem to “mesh” well so I thought maybe cooking it lightly would help it all blend together. It worked!! You don’t really need to get it very hot.

Then let it cool and put it in whatever container you choose. I am using one of my old plastic fabric softener bottles.

I used some today and I really like it. My clothes smell clean, there is a faint coconut smell. But mostly just clean and fresh!

There are several people very near and dear to my heart facing some major challenges right now. As there were weighing heavy on my heart this morning and I was calling out to the great healer above, this word Faith just came to my mind and I knew I had to write about it.

What is Faith? Well Webster dictionary defines the word Faith as:

1. confidence or trust in a person or thing: faith in another’s ability.

2.

belief that is not based on proof: He had faith that the hypothesis would be substantiated by fact.

3.

belief in God or in the doctrines or teachings of religion: the firm faith of the Pilgrims.

4.

belief in anything, as a code of ethics, standards of merit, etc.: to be of the same faith with someone concerning honesty.

5.

a system of religious belief: the Christian faith; the Jewish faith.

Great! What does this all mean in our everyday lives? You might also be thinking you didn’t come here for a vocabulary lesson lol.

Well I am a Christian and I believe in God, Jesus and the Holy spirit. I was raised to believe that if anything bad ever happened to me it was because I was not a “strong” enough believer or I didn’t pray hard enough or have enough faith. I spent lots of years beating myself up, wondering how to have the kind of faith that would make mountains move. And what was so wrong with me?

Then I became an adult and I started learning that God loves us. I believe he does not punish us for not praying hard enough or believing hard enough. This is all new to me. I still have more questions than answers, but this is what I was starting to believe.

Then I got sick. MR. MG reared his ugly head. And do you know that there are still some people even in my immediate family that think I can just pray it away. That I am sick because I do not have enough faith?

Then my sweet baby Noah came along. He was very sick, life threatening heart condition sick. Was I being punished for something I had done? Was he sick because my faith was not strong enough? I am learning that’s now how it works. At least not for me.

I have many people ask me how I made it through those rough patches with Noah. They say they don’t think they could handle it. I really have not explanation. Except maybe Faith?

Did I question God? ABSOLUTELY! Did I wonder why he would let something like this happen to my sweet baby boy? YOU BET!!

However, I also prayed like I have never prayed before. And I had a sence of peace. I knew no matter what happened somehow it would all be ok. Guess what? It was. We had a first hand look at several miracles. That sweet baby boy that we weren’t sure was going to make it through his first 24 hours is now a thriving, mischievous three-year old. Some people call it lucky…I say we are blessed.

So that brings us back to Faith. To me having faith does not mean you can’t question, or doubt, or wonder. We are only human after all. God knows this, he expects this, he created us he knows we are not perfect. However, he loves us anyway! How amazing is that? He loves us anyway!

Having faith to me means trusting even through the questions and doubt. Believing it will be ok no matter the outcome. And leaning on the one that created us and loves us unconditionally to see you through.

I am learning everyday. I make mistakes. God loves me anyway. I am learning that if I just give him control he will bless me more than I can ever imagine. It may not always be what I think I need or want, but it will always be OK. It will always be his will, I just have to have FAITH!!

I pray for my dear ones that are going through unspeakable trails right now. I pray that whatever the outcome they will have peace, and know everything happens for a reason. We may not always understand it. Even in the dark times when we feel alone, God is there. Reach out to him and he will comfort you.

I have been gone for sometime. Have you missed me? Lordy,Lordy I have had a lot of changes.

We thought we were buying a house, so we sold ours only to have the one we were buying fall through. Thought we were going to buy some property, closed on our house, property fell through. So we currently have no house and are mostly living with my in laws. How’s that for a good time?

Lots of catching up to do. However American Idol is on right now so I’ll have to get back to you. Lol. Seriously I love me some Steven Tyler!!

I have been gone for sometime. Have you missed me? Lordy,Lordy I have had a lot of changes.

We thought we were buying a house, so we sold ours only to have the one we were buying fall through. Thought we were going to buy some property, closed on our house, property fell through. So we currently have no house and are mostly living with my in laws. How’s that for a good time?

Lots of catching up to do. However American Idol is on right now so I’ll have to get back to you. Lol. Seriously I love me some Steven Tyler!!